Bliv involveret

Patient in Focus sætter stor pris på dine erfaringer, oplevelser og viden omkring livet med et fysisk, psykisk eller mentalt handicap eller som pårørende.

På denne side kan du blive involveret i dansktalende patientinddragelsesprojekter.

Vi ønsker at din unikke viden bliver delt og derfor giver vi dig en enestående mulighed for at deltage i forskellige projekter – store, som små.

Valget er dit, og vi vil gøre alt i vores magt for, at du får den bedste oplevelse.

Patient inddragelses listen

 
Vi håber, at du vil udfylde vores patient engagement liste til andre projekter, vi måske har mulighed for at involvere dig i, uanset om du er pårørende eller patient.
  • Project name: Pompe disease (Rare disease)
  • Purpose: To share your patient journey so that new and better products and services can be developed to better support Pompe patients in the future.
  • Description: Participate in an online advisory board where things like your personal experiences, wishes for the future, various project ideas and more is discussed.
  • Your role: Tell your personal story with the disease, participate in group discussions, brainstorm new ideas and wishes for the future etc.
  • Location: Online 
  • Language: English 
  • Date: August 2022
  • Time: To be determined (TBD) 
  • Hours: 1 or 2 days 
  • Sex: Women and men
  • Age: All (children under 18 must participate with a parent or legal guardian) 
  • Criteria:
    • Have Pompe Disease or is a relative or caregiver to someone with this rare disease.
    • Ability to communicate in English is helpful but translators can assist when needed.
    • Be willing to share your patient journey, experiences, insights and discuss new ideas for the future
    • Live in Europe
  • Assistance: Guidelines or sparring possible with a mentor (who also is a patient)
  • Expenses: None 
  • Payment: Yes 
  • Join: If you wish to participate, please complete the form at the bottom of the page.
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